4238

One year on…

Alexandra has now had type 1 diabetes for a single year. In that one year, she has gone from blood sugars that averaged in the mid-20s /mmol (that’s 400 to 600 /mg) to blood sugars that average less than 7.0 /mmol (125 /mg). For reference, a non-diabetic has blood sugars of less than 100 normally.

At diagnosis, her A1C, which measures the sugar in her blood over a 3 month period, was 14.7%. That equates to 22.4 /mmol (or 404 in the U.S.). Her most current A1C, done a few days ago, was 6.5% which equates to 7.2 /mmol (130 /mg). That’s a full point lower than it was last March. People with type 1 diabetes would love to have an A1C like that. And parents of children with type 1 diabetes would kill to see that for their child.

That A1C does not come easy. It calls for lots of sacrifices, from all of us, Alexandra most of all, naturally. That 4,238 represents 2,718 finger pricks to check her blood sugar plus 1,520 injections. Give or take a handful, when maybe I forgot to log it. On average, though, nearly 12 times a day, my child has to have herself poked with a needle or a syringe.

In a single year: 4,238.

It’s been a long year. One in which I’ve aged probably ten-fold. I haven’t yet slept a full night through. I miss that. I also miss the spontaneity of our lives; everything has to be planned and thought through. I miss the sweet girl who used to live with us, who is occasionally replaced with her demon double. I really miss the “before” diabetes days.

But the after is what we’ve got to live with. And live with it we shall.

And one year on, I’d be remiss if I didn’t thank the people who helped Alex achieve a very successful first year… people like Michelle, Jane, Adjoa, Carla, Beth, Paula, Tim, Melissa, Scott and probably another dozen wonderful people who I hope will forgive me for not specifically mentioning them here. They’ve helped us by providing meters, strips, insulin pens, i-ports and all of the things that Alex needs to live her life to the fullest. And I can’t put a price on the emotional and psychological support I get from friends all over the world, friends who share with me one single all-encompassing value: We each love a child who has diabetes.

Most of all, I want to thank my mom, because we couldn’t have done it without her. She's sent umpteen care packages, all packed with necessities and goodies. And she'd be here in a minute if I asked her to be. Don't worry, mom, I won't ask. ;-)

Last, but not least, I want to thank Alexandra. She didn't ask for this stupid disease, and no, she didn't do anything to get it. But, she does what she has to do, usually without a grumble and sometimes even with a smile.

She's still my hero.

Please, pray for a cure.

All pizza is not created equal

Pizza is almost always the first choice in my household when the question, “what do you guys want for dinner?” is posed. I really don’t ask that question too often, as there are very few places that make pizza that’s anything close to what we know and love in the U.S. Of course, I’ve taught myself to make pizza, and I’ve gotten pretty good at the dough thing. In truth, I like to make pizza when I’m in one of my “moods” so that I can pound the hell – I mean gently knead – the dough to the proper consistency.

When I make pizza at home, I know pretty well how it will “respond” to Alex’s blood sugar and I can give her the right amount of insulin at the right time so that there’s very little change in her sugar level from fat spikes. See the tricky thing about pizza is the very thing that makes it perfect -- the combination of cheese, pizza sauce and dough. I've got it figured out that each slice of my homemade pizza has 30 carbohydrates in it. Homemade pizza is not a problem.

But, once in a great while, we’ll give in and buy a pizza, which we did last night. Southern Fried Chicken has really great red red, pretty good chicken and not too great pizza, but they do know how to do mozzarella cheese. And that, unfortunately, is Alex’s Achilles heel. She loves cheese – the gooier, the better. And this pizza was pretty darn gooey.

So before she even chewed her first slice, she got a single unit of Humalog; four slices later she got another 1½ units of Humalog. These weren’t really big pieces, and usually one unit per slice of my bigger homemade pizza pie is enough, so I assumed 2½ total units would be okay. After dinner and just before she went to bed we checked her number and she was actually 4.9 (88 to you /mg people); that would be lovely during the day, but I worried that she might still have insulin on board (or IOB, as we say in the trade – and you’ll need to know this later for the test) so I had her chew a couple of Lucozade tabs and say nighty night.

Sometime after midnight I heard her smacking her lips, a lot, as though her mouth were dry, so I figured I’d check her already. I mean, I was already awake having to listen to that lip smacking noise which is second only to listening to my husband snoring on my sleep deprivation scale. Sugar: 19.4; that’s a decimal point short of 350 in America. No wonder she’s smacking her lips like that. Not good. Thinking her fingers might still have glucose tab residue, I wipe her finger down and prick her again. The numbers are not improving at all. 24.1 (433) this time. Okay, so which crappy number do I believe and correct for? I open up the vial to draw out another strip to check her again and the strip flips out of my hand into the basket next to my bed – mind you, each strip is approximately $1 – but I’m not about to go looking for it. I check a third time – 25.1 (451) – this is getting worse and worse.

Here it is; the diabetes guy I hate most of all: Fat Spike. Fat Spike is going to do everything within his power to keep me from getting any decent sleep. I will have to figure out how much insulin to give Alex. But first, I’ve got to decide which number to believe. So I do the only logical thing; I figure the average and proceed from there.

Now, remember, it’s about 1:15 a.m. Normal people don’t even drink water well at 1:15 a.m. much less do math in their head. By my estimation, I figure she needs 2½ units of Humalog to get her into the high end of her range.

Here’s my math:

19.4 + 24.9 + 25.9 = 68.6 / 3 = 22.8

Ideal daytime range = 4.0 to 8.0

22.8 – 8.0 = 14.8 point reduction

Each unit of Humalog reduces her by 5.1

14.8 / 5.1 = 2.84 units

I’m rounding down to 2.5 units since its night time and who knows what’s going to happen. At night, you can’t just trust that you’ve corrected well. Nights are different. You have to check, check and check again. She could come down way too fast and crash while I’m sound asleep. The problem is consistency. At night, there is none. There’s no regular pattern for how well or poorly a correction will work. As it turns out, this one works a little too well.

At 1:20 a.m. I give her 2½ units of Humalog and set my clock.

At 2:24 a.m. she’s at 11.9 (214) and I think “good.” I set my clock again and go back to sleep. Only I don’t sleep, I think to myself that that’s a pretty steep decline for less than an hour’s worth of insulin. Maybe the meter was wrong. Let me recheck.

At 2:32 a.m. she’s 13.4 (241) – that’s better, but still worrying; I set my clock again. Instead of going to sleep I check my email on my phone browser and worry that the constant beep beeping is too loud.

At 2:55 a.m. she’s 13.8 (248) – what the hell is going on with her blood? I set my clock again and play with my phone again.

At 3:34 a.m. she’s 6.0 (108). Shit. She’s still got IOB of at least 1/3 of her dose. I can’t let her sleep on this, so I wake her up to eat some Lucozade tabs again, and drink some of this nasty glucose drink that my mom sent. This time I don’t set my clock. I’m sure she’ll be okay. Maybe she would have gone lower with the IOB and these extra carbohydrates will counteract and she'll be in normal range when she wakes up. Maybe.

Or maybe not.

At 5:52 a.m. she’s 10.8 (194). Mea culpa.

Pizza wins. Mom loses. Till next time.

Who the hell are you? And what have you done with our daughter?!

Ask the parent of any child with type 1 diabetes and they’ll tell you that it’s like living with a miniature version of Dr. Jekyll and Mr. Hyde. Blood sugars absolutely rule our kids and we work feverishly to ensure that they’re always in range. To say “that is easier said than done” is an understatement, to put it mildly.

Alex is no exception. Early in the diagnosis, we could always tell whether or not she was low or high. When she was low, she would get all teary-eyed and upset. When she was high, she was angry and combative. Now, it seems that we’re having trouble differentiating between lows and highs, because she gets crazy for both. And when I saw crazy, I don’t mean like nutty and silly. I mean crazed, as in stark raving mad lunacy. If she were a cartoon character, her face would turn crimson and she’d have steam blowing out of her ears.

I’ve got to say, I am glad she’s only 8 years old, because if she were stronger, we’d all be in big trouble. She will physically attack Sean for even the slightest insult or transgression (he’s a notorious teaser). I have to get physical just to get her to calm down. And I don’t mean I physically beat her (though, God knows, I’m tempted), but I have to restrain her (I know she is going to hurt Sean one of these days; fortunately, he doesn’t retaliate, but I know its coming) or push or drag her into the bedroom and force her to calm down, all the while I’m giving her an injection of her potion, er, I mean her insulin. She will throw a tantrum the likes of which you never want to see.

The worst part of it all is that when Alex acts like that, it’s all my fault because I could have prevented it from happening in the first place. It’s my job to keep her numbers under control, and if Miss Hyde is unleashed, it’s because I neglected to give her insulin in the right dose or at the right time, or I didn't calculate her carb factor correctly or she ate more or less than I expected her to eat. I’m only human.

But so is Alexandra. And I have to remember that, and sometimes remind her brothers and her dad, that she can’t control herself. It takes a lot of will power and effort to calm yourself down when too much sugar is racing through your veins – you can’t think straight, you can’t even see straight. It takes insulin and time, in that order. And a lot of love. Oh yeah, a lot of that. But I’ve got to be honest; it isn’t easy loving her when she’s Miss Hyde, but I do it because I know that her alter-ego – Alexandra – is in there somewhere, ready to emerge from the darkness to be our normal little girl again.